Tag: Cleft palate

I AM NOT READY… The days leading up to this one seemed so far away when I delivered my baby girl, yet here I was ready to face the most uncertain and emotionally draining day of my life! How did 5 months go by so quickly? Where did the time go? The first five months were such a blur, it seemed like we were going non-stop as I’m sure most new parents do. The days just blended with the nights and time didn’t care that I was exhausted!!! I can’t complain too much though, for I was blessed with an amazing baby who never cried, unless she was hungry. I was fortunate to never experience difficulty with feedings and luckily she took well to the formula/breast milk combination.

We spent a beautiful afternoon with our little princess on the day before surgery. We played. We laughed, she actually laughed harder than usual for the first time that day and we tried to soak in as much as possible. We took extra pictures, more than the already ridiculous amount we had been accumulating through the months… LOL! We wanted to remember the beautiful smile she came into this world with, as we knew her little face was about to be transformed within in a matter of hours.

SURGERY DAY WAS HERE and we had to be in the hospital at 5:00am. She could not eat or drink anything after midnight on the night before surgery, not even water! Can you just imagine having to wake up a sleeping 5 month old and not feed her immediately? I was panicked and stressed out. I didn’t want her to arrive grumpy to an already stressful event, but I understood the rules, and per usual followed Doctors orders. We woke her up at 4:30am, put her in the car seat as gently as we could and tried our very best to keep her sleeping as much as possible. I did wake her up at midnight to make sure her belly would be nice and full before surgery! She slept on the car ride, and to everyone’s surprise my little super human-super trooper never cried for milk! She patiently waited on an empty stomach until they finally took her in at around 9:00am. To say I was in disbelief is an understatement! This little miracle child always gave me the strength I needed to keep moving forward. We arrived at the hospital, checked her in and got settled in her pre-op room. The Doctors and Nurses at Joe DiMaggio Children’s Hospital were an absolute dream team. There was so much going on…soooo many doctors and nurses asking the same questions over and over. “Is she allergic to any medications”? I DON’T KNOW, she’s 5 months old. That question is very unsettling minutes before surgery, what if she was? Would she be in any danger? UGH!!!! Bile was rising in my throat. They brought her toys and put her in the cutest littlest hospital gown I had ever seen. She played and laughed and kept the rest of us going. When the anesthesiologist came in, things got pretty real. It hit me like a ton of bricks that she would soon be gone from my sight for the first time in 5 months since they placed her in my arms. I was a ball of nerves. We had been waiting in the hospital since 5am, and the doctor did not show up until 8:30ish…DIDN’T HE KNOW MY BABY HAD NOT EATEN SINCE MIDNIGHT THE NIGHT BEFORE? When he finally arrived we had a ton of questions, but of course now was not the time to ask them. He was ready to transform my daughter’s face and all these questions had already been discussed in his private office weeks before, but still…this was our child, how could we not ask again and again and again? He said his goodbyes and promised us she would be fine. The nurse came in, gave my baby an oral sedative (which she absolutely hated) and we watched her drift off into a nice, relaxing fantasy land. It made our departure from her a little easier, knowing she would not cry when they took her. We were not allowed to go with her so had to say our goodbyes. THAT IS WHEN IT HIT ME!!! When they finally took her and we lost sight of her down that long corridor, I lost it! It felt like a piece of my heart had been ripped out of my chest.

IN THE WAITING ROOM, our closest relatives surrounded us. We had an incredible support group and they were always with us for emotional support. Led by my Uncle, we made a circle and said a prayer for our baby girl, then all we could do was wait…

MINUTES TURNED INTO HOURS as we waited. We kept our eyes glued to the TV monitor for updates. We were given a number, and updates were provided in real-time. It let us know where she was at all times, Surgery. Post OP, Recovery, Etc. She was in surgery a few hours, but we felt some comfort in knowing that 2 of her dental team members were interning and in the Operating room watching over our daughter and seeing her transformation. These amazing ladies had met my daughter when she was 2 weeks old, so we were quite trusting of them. Before we were allowed to see her, they both came out to personally to tell us that she had done great! Surgery had gone beautifully and she was in recovery. The first thing I felt was relief knowing she was not allergic to anything and came out of surgery okay. I was so excited to see my little princess, but I had to wait just a little longer…

WHEN I SAW HER FACE I was paralyzed. On one hand I could not believe the incredible transformation. She looked like a completely different baby. But on the other hand, I was sad to see all the swelling and bruising on her beautiful little face. She started coming out of anaesthesia and was not a happy camper. They let me hold her which was no easy task as she had wires and needles everywhere, but I was able to get her to relax and stop crying. The saddest thing for me was to see her placed in arm restraints for her own protection. She had nasal stents in her nostrils which needed to remain in place for 2 weeks post surgery and she wanted no part of them. These stents are so large that I think the average adult would flinch at the thought of inserting them. She tried pulling them out so the nurse had to put her in restraints. It was not easy, but I was happy to be holding my daughter knowing this would soon be in the past as part of her journey. Daddy and I took turns seeing her and holding her and kissing her non stop. We stayed in the hospital for several days with her and took turns holding and playing with her. This child of mine is an absolute super hero and I am beyond blessed that she chose me to be her mommy. Those days were not easy ones, but we got through them together.

WE ARE READY TO GO HOME…we were sleep deprived and ready to settle down in the comfort of our home. I know it would be challenging to keep those stents in her nose, but we were ready to do what needed to be done. At home we were a little more lenient with her arm restraints when we held her. We were on constant alert and always moving her arms away from her face but after a few days, she became used to the stents and didn’t mess with them as much. Night time was hard because subconsciously she tried to pull them out. It’s crazy that I don’t remember this, but I am not certain whether she made it to two weeks or not. I believe one of them fell prior to her 2 week follow-up and I was NOT about to put it back in. The 2 weeks leading up to the follow-up visit were very difficult. My daughter could not easily breathe at night, she was very stuffy as her stents were clogged with blood and drainage from her surgery. We were told that we could clean them with pipe cleaners while they were on, but we just weren’t that brave. She was forced to adjust to breathe out of her mouth at nights. I was secretly praying the stents would just “accidentally” fall off if I’m being honest. I just felt it was tooo much for her little body to have to handle. I suppose God answered my prayers though we will never confess to her Doctor.

AND JUST LIKE THAT this too became a thing of the past! My daughter recovered amazingly well and didn’t miss a beat post surgery. She had some post surgery scabbing where the stitches had been placed as well as on the inside of her nose, but we did not mess with it too much. We allowed her time to heal naturally and they eventually fell off on their own after about 4 weeks. I would massage her lip to break down the scar tissue several times a day which made me nervous at first, but once she became used to them, she didn’t seem to bothered at all. To say children are adaptable and resilient is an understatement. My daughter is my driving force. Everything I do, I do for her. I was looking forward to enjoying a little more freedom and to letting her crawl around without fear of her bumping her NAM in, etc. We were ready to enjoy the next few months before the palate repair surgery which was only 6 months away. I knew how quickly the first 5 months flew by, so the next 6 would be soaked in and enjoyed to the absolute fullest.

ENJOY EVERY MOMENT no matter how overwhelming the future seems. BREATHE and soak it all in because they grow up FAST!